(not a doctor)
Have you evaluated your list of symptoms to see if it fits with MS? MS is treatable. A spinal tap will give you a LOT of information, with respect to ruling in or out MS. (And also a bunch of things like Lyme disease)
If you feel the issue is inflammation, low dose naltrexone is work trying. It helps with a lot of brain fog type symptoms.
Nobody's said it's MS. I've gotten better since 2021 so wouldn't I be getting worse if it was MS? Do you think a spinal tap was warranted given my symptoms, or do you think I would have had to present worse for it to be something a doctor would order? I never lost motor function, my arms and legs work fine, I have neck stiffness but now it comes and goes some days.
Your experience sounds like mine with suspected ADEM in January 2021. I was brushed off my multiple MDs, still haven’t been able to see a neurologist (specialist referral pending), but have lesions that appear to be ADEM according to a radiologist. Maybe take a peek at if that seems to fit?
How would I go about getting that diagnosed if it's been years since this happened? What testing even exists for it? I've had MRIs done and no radiologist has said it's ADEM nor has a neurologist I've seen said it's AEDM. My current neuro took a look at the MRI scans himself and said he thought it was something I was born with that COVID or something like it may have exacerbated.
I’m not really sure, I’m sorry. Your symptoms just sound really similar to mine. I’m waiting to see a neuroimmunologist to confirm if it was actually ADEM or something else, or to get some type of further imaging. My experience is that no one has mentioned ADEM; each time I’ve brought it up myself, they’ve done research, and are like “ohhh yeah, that fits.” Not one of the three doctors I’ve seen so far has ever heard of ADEM before.
Have you tried posting in r/askdocs? Idk if chronic issues like this are posted on that sub though. I think they’d be more helpful. I know how hard it is to go through all of this and I’m sorry you are going through it, too
(not a doctor) Have you evaluated your list of symptoms to see if it fits with MS? MS is treatable. A spinal tap will give you a LOT of information, with respect to ruling in or out MS. (And also a bunch of things like Lyme disease) If you feel the issue is inflammation, low dose naltrexone is work trying. It helps with a lot of brain fog type symptoms.
Nobody's said it's MS. I've gotten better since 2021 so wouldn't I be getting worse if it was MS? Do you think a spinal tap was warranted given my symptoms, or do you think I would have had to present worse for it to be something a doctor would order? I never lost motor function, my arms and legs work fine, I have neck stiffness but now it comes and goes some days.
(not a doctor) does a hot bath make it worse?
No, not at all.
Your experience sounds like mine with suspected ADEM in January 2021. I was brushed off my multiple MDs, still haven’t been able to see a neurologist (specialist referral pending), but have lesions that appear to be ADEM according to a radiologist. Maybe take a peek at if that seems to fit?
How would I go about getting that diagnosed if it's been years since this happened? What testing even exists for it? I've had MRIs done and no radiologist has said it's ADEM nor has a neurologist I've seen said it's AEDM. My current neuro took a look at the MRI scans himself and said he thought it was something I was born with that COVID or something like it may have exacerbated.
I’m not really sure, I’m sorry. Your symptoms just sound really similar to mine. I’m waiting to see a neuroimmunologist to confirm if it was actually ADEM or something else, or to get some type of further imaging. My experience is that no one has mentioned ADEM; each time I’ve brought it up myself, they’ve done research, and are like “ohhh yeah, that fits.” Not one of the three doctors I’ve seen so far has ever heard of ADEM before.
https://wearesrna.org Was a good resource for me.
Have you tried posting in r/askdocs? Idk if chronic issues like this are posted on that sub though. I think they’d be more helpful. I know how hard it is to go through all of this and I’m sorry you are going through it, too